July 28, 2005

The Wrong Side Of History

Update: I just got a call from the AJC that they are going to print my letter.

Yesterday I read an opinion piece printed in the Atlanta Journal Constitution by a member of the editorial board. I wanted to post it here so that I could both answer it, and record it for posterity. It is an example of the kind of harsh, myopic criticism against parents like me who question the conclusions of the Institute of Medicine and choose to treat their child’s autism medically.

The response I make to the article is not a full one, but a succinct one that I felt would have a better chance of being printed in the letters to the editor. To try to respond to all the problems and biases in this piece would require a book. A book like Evidence of Harm for example.

Distrust feeds ignorance of health facts
Mike King
The Atlanta Journal-Constitution
Published on: 07/28/05

A recent survey by the Atlanta-based American Cancer Society found that roughly half of Americans believe that surgery causes cancer to spread. And about 25 percent think that science has already found a cure for cancer, but it is being held back by a profit-driven health care industry.

It has to do with trust.

The continuing controversy over whether autism is linked to trace amounts of mercury used as preservative for childhood vaccines is in this same category. In recent years the Centers for Disease Control and Prevention, the Food and Drug Administration, the Institute of Medicine (the medical arm of the National Academy of Sciences) and the American Academy of Pediatrics have all debunked the concern that thimerosal, the preservative, causes or even contributes to autism. At least five major scientific studies have come to the same conclusion.

Yet the number of people who believe the link has been firmly established — parents of children with autism, in particular — continues to rise. They received a significant shot in the arm last month when Robert F. Kennedy Jr. wrote an article in Rolling Stone magazine suggesting the nation's public health community is conspiring with drug makers to cover up the damage done by thimerosal.

A government bureaucracy that willingly subjects children to the risk of autism in exchange for propping up the pharmaceutical industry certainly wouldn't want a cure for cancer to become widely available, now would it?

This is lunacy.

"It's really terrifying, the scientific illiteracy that supports these suspicions," said Dr. Marie McCormick, chairwoman of the Institute of Medicine panel that issued its report on the research about thimerosal and autism last year.

It's one thing to refuse to consider the scientific evidence; it's quite another to act out of willful ignorance and subject yourself or a loved one to what amounts to medicine-show cures. Yet that's what some parents of children with autism have begun to do with chelation therapy, a treatment that should be confined only to patients with acute metal poisoning.

Chelation involves using drugs to remove heavy metals from the body, but when administered improperly — as in using it for patients with autism — it can lead to liver and kidney damage and other problems. Similarly, some autistic children are prescribed a dozen or so vitamin supplements to take every day, and their diets heavily restricted as a way to deal with the condition, according to testimony in lawsuits. Some are subjected to 160-degree saunas to sweat the metal from their systems.

The panic stems from a 1999 FDA finding that the amount of mercury contained in the normal immunization schedule for children exceeded the agency's guidelines. By 2001, no vaccines for children had more than a half of a microgram of mercury in them — an amount that is roughly equal to that found in an infant's daily supply of breast milk.

But the controversy continues, fueled at least in part by the alarming rise in the diagnosis of autism. In the 1980s, the condition was found in roughly one child in every 10,000 births. By 2003 that ratio had changed to 1 in 166.

Suspicion is so strong in some circles that CDC researchers told The New York Times recently that they have received threatening letters and phone calls. The Atlanta-based agency has increased security because of the threats, the newspaper reported.

Although it hasn't felt such a backlash, the American Cancer Society — located across the street from the CDC — must understand the frustration. The organization asked 957 adults without cancer to answer a true-or-false quiz. Fifty-four percent said they either weren't sure or were convinced that surgery spreads cancer; 27 percent said they believed a cure was available but being withheld; and nearly 20 percent believe pain medications were ineffective in cancer patients.

Over the years, cancer and pain-management specialists have made remarkable progress in that arena. What a shame that message hasn't gotten through to some patients and their loved ones.

— Mike King is a member of the editorial board. His column runs Thursdays.

Here is the letter I sent to Mr. King in response to his column:

Your Autistic Opinion

Mr. King,

I read your piece and wanted to let you know my thoughts on it.

As the parent of a mercury and lead poisoned child who has been diagnosed as autistic, and as one who has spent the last year watching him recover through the biomedical interventions that you seem to mock in your writing, I have to tell you that my first impression on reading it was, "Wow. I wonder how this guys is gonna feel when he begins to realize that he is on the 'wrong side of history'".

Thousands of kids with autism are improving, and some are even becoming indistinguishable from their peers through these biomedical interventions. I believe, with what I am seeing in my son's life and in the other autistic children that I know, that in ten years a more refined version of the interventions that you malign now will be the SOP in the treatment of autism.

You can argue about studies all day long, but you can't argue with results.

Next time, interview a few of these "scientifically illiterate" parents to see just why they dismiss the opinions of Marie McCormick. I think you will be surprised how scientifically literate they are, and just how poor Ms. McCormick's judgment is when it comes to weighing the scientific literature on autism.

Bottom line, parents believe what they are seeing with their own eyes. Here is what I am seeing with mine: http://adventuresinautism.blogspot.com/2005/06/my-boy-can-talk.html

I only hope that your column does not deter some parents who have a newly diagnosed child from seeking medical treatment for autism, which is a medical disorder.

Ginger Taylor

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